School of Social Sciences,University of New South Wales,Sydney,New South Wales,Australia.
Health Experiences Research Group,Oxford University,Oxford,United Kingdom.
Palliat Support Care. 2018 Aug;16(4):396-405. doi: 10.1017/S1478951517000475. Epub 2017 Jun 21.
ABSTRACTObjective:Experiences of bereavement can be stressful and are frequently complicated by emotional, familial, and financial issues. Some-though not all-caregivers may benefit from bereavement support. While considered standard within palliative care services in Australia, bereavement support is not widely utilized by family caregivers. There is little research focused on the forms of bereavement support desired or required by family caregivers, how such care is viewed, and/or how bereavement support is experienced. This study examined the experiences of bereaved family caregivers and their impressions of and interactions with bereavement support.
This paper reports on one aspect of a broader study designed to explore a range of experiences of patients and caregivers to and through palliative care. Focusing on experiences of bereavement, it draws on qualitative semistructured interviews with 15 family caregivers of palliative care patients within a specialist palliative care unit of an Australian metropolitan hospital. The interviews for this stage of the study were initiated 3-9 months after an initial interview with a family caregiver, during which time the palliative patient had died, and they covered family caregivers' experiences of bereavement and bereavement support. Interviews were digitally audiotaped and transcribed in full. A thematic analysis was conducted utilizing the framework approach wherein interview transcripts were reviewed, key themes identified, and explanations developed.
The research identified four prevalent themes: (1) sociocultural constructions of bereavement support as for the incapable or socially isolated; (2) perceptions of bereavement support services as narrow in scope; (3) the "personal" character of bereavement and subsequent incompatibility with formalized support, and (4) issues around the timing and style of approaches to being offered support.
Systematic pre-bereavement planning and careful communication about the services offered by palliative care bereavement support centers may improve receipt of support among bereaved family caregivers in need.
摘要
丧亲之痛可能会带来压力，并且常常会因情绪、家庭和经济问题而变得复杂。一些（尽管不是全部）照顾者可能会从丧亲支持中受益。虽然在澳大利亚的姑息治疗服务中被认为是标准服务，但丧亲支持并没有被家庭照顾者广泛利用。很少有研究关注家庭照顾者所希望或需要的丧亲支持形式、对这种照顾的看法，以及/或者丧亲支持是如何被体验的。本研究调查了丧亲家庭照顾者的经历，以及他们对丧亲支持的印象和互动。
本论文报告了一项更广泛研究的一个方面，该研究旨在探讨患者和照顾者在姑息治疗中的一系列经历。本研究聚焦于丧亲经历，它借鉴了对澳大利亚大都市医院的一个姑息治疗专科病房的 15 名姑息治疗患者的家庭照顾者的半结构化定性访谈。本研究阶段的访谈是在家庭照顾者的首次访谈后 3-9 个月进行的，在此期间，姑息治疗患者已经去世，访谈内容涵盖了家庭照顾者的丧亲经历和丧亲支持。访谈进行了数字录音并完整转录。采用框架方法进行了主题分析，其中对访谈记录进行了审查，确定了主要主题，并提出了解释。
研究确定了四个普遍存在的主题：（1）丧亲支持被社会建构为针对无能或社会孤立者的支持；（2）对丧亲支持服务范围狭窄的看法；（3）丧亲的“个人”性质以及随后与正式支持的不兼容；（4）围绕接受支持的时间和方式的问题。
系统地进行丧亲前规划，并仔细沟通姑息治疗丧亲支持中心提供的服务，可能会提高有需要的丧亲家庭照顾者接受支持的可能性。
